XLID98 Foundation

The XLID98 Foundation has been working diligently to raise awareness and support medical research, with the goal of ensuring that children diagnosed with this rare condition receive the existing and new treatments they need to achieve the best possible improvement in their quality of life.

We have recently initiated the development of an XLID98 Data Registry to address the gaps in health information, encompassing both known and previously unknown symptoms. The goal is to achieve a comprehensive understanding of the condition and its progression over time.
With donor contributions, we are one step closer to achieving our goal of developing a gene therapy for this condition and purchasing essential equipment for this gene therapy research, which will help us further understand the response of our XLID98 mice to a treatment strategy.